My dad has esld...alcoholic cirrhosis

A friend and I spoke on this very subject yesterday evening. He had to face that option with his sister. My family is all still alive where making that decision hasn't been faced for me. I can't put myself in your exact shoes, Then again nobody could at this moment. I do however look at it from my own personal feelings.

I'm just a vessel that's filled with the stuff that makes me human. Not the guts and heart but the soul. That's who I am. The person that laughs and cries, smiles and frowns. All that stuff that makes this image or vessel will go away inevitably. My soul will last eternally in those who love me and hopefully it'll haunt the ones who don't but that's another matter entirely. Anyhow back on the subject. For me although I had close calls I made it clear that I don't want my family to remember me in a vegetative state. When it's time for me to go and the prognosis only buys me a few months of pain, Just let me go.

I love my family and most of my true friends. I see no point in having them mil about a hospital in sorrow and pain. This world is full of pain without that added to it. Laugh at the character of me. Enjoy life and get own with yours. The vessel is gone but the soul, the stuff that leaves footprints in others soul will remain. Nothing I say will help ease your decision but know my soul is with you and the family.


Ziff

Not true, I washed two weeks ago. Cleanliness is a matter of perspective amongst swine.

Ziff

Allow me to re-post this Jodi as I found it so comforting and I think you and your family might, as well. Hugs, Mae

Gone from My Sight by Henry Van D y k e

This is a re-post of a poem that helped me with the death of my mother and brother. It captures for me our belief that death is the start of a new part of our journey and that when we die there will be others waiting to greet us.

I am standing upon the seashore. A ship, at my side,
spreads her white sails to the moving breeze and starts
for the blue ocean. She is an object of beauty and strength.
I stand and watch her until, at length, she hangs like a speck
of white cloud just where the sea and sky come to mingle with each other.

Then, someone at my side says, “There, she is gone”

Gone where?

Gone from my sight. That is all. She is just as large in mast,
hull and spar as she was when she left my side.
And, she is just as able to bear her load of living freight to her destined port.

Her diminished size is in me — not in her.
And, just at the moment when someone says, “There, she is gone,”
there are other eyes watching her coming, and other voices
ready to take up the glad shout, “Here she comes!”

And that is dying…

One Response to “Gone from My Sight by Henry Van D y k e”
BarbClapperton says:

Hi Deacon Mike,
Do you remember the comic strip “Family Circle?” – and the little boy lost his grandfather – in the comic strip the grandfather was lying in a hospital bed surrounded by the family and the doctor says “he’s gone”, and to the upper right of the bed you see the grandfather rising and above him all his friends who had gone before him saying “he’s here!!”
I saw this comic right around the time my brother passed away and I could just see my grand parents saying “there he is, he’s here.” For some reason knowing my brother will meet me a the doors of heaven gave me great comfort to calm my own fears. Barb

Yes I was initially given 3 months max and my condition is was listed as terminal. I went into renal failure when I finally was provoked into getting checked out for swelling issues (edema). I went through ER at primary care physicians office request after getting lab test back the following morning. Could barely walk and my mind was all screwed up.

Went into coma for a few days after admission. Woke up a week later in another town 45 minutes North of where I currently live. Fiance and family hovering over me. I stayed there for a month in ICU ward. Encephalopathy and swelling increased. Kidneys came back on line within the first week. After a month of close monitoring and talk of possibly me not making it I confronted the doctor with my family present and asked what my prognosis was. "Rarely do we see a person with a MELD as high as yours survive beyond three months. Your liver is shot". Asked me to stay and go through further evaluation. No I replied. I will go home and die if that is all that's left. I signed the papers and got wheeled out to my family.

I got a appointment with UNC Chapel Hill the following month where I met doctor Hayashi for the first time. He got me acquainted with the how the transplant team works and then he lowered the boom on me. "YOU WILL DO THIS AND THAT OR YOU WANT BE IN THIS PROGRAM." Let me say I was never one to accept orders from anyone and particularly not ones from someone who seemed to have a lack of respect or sympathy for me. He pulled out a piece of paper like tons I'd seen before. This one was different. It had a set of demands to be met in the course of six months. He said " Good luck and hopefully we'll see you in a few months to check your progress.

How do they expect me to do this junk when I can't even wipe my own rear much less gather a complete sentence together. I'm a dead man. I cried all the way home 2-1/2 hours and stared out the window. Three months rolled by then five months rolled by and by now ascites was taking a toll on me. My belly button popped out (Hernia) I was on diuretics and still getting drained twice a month. The ascites got so bad in my abdomen it pushed my intestine through the hernia and almost ruptured it. Emergency surgery was performed to make the repairs to put it into place. Keep in mind. I am still attending mandatory Substance abuse courses once a week through a therapist. Yes, No AA for this piggy although it was a option on the sheet of requirements the kind doctor requested I do that instead.

I submitted urinalysis and blood once a month randomly with every other doctor appointment they had me running to. I am slightly over 6ft tall and weighed prior to this mess @ 225lbs., I dropped to 145 after paracentesis was done each time. I was wasting away with a abdomen that would make a 9 month pregnant women cringe. I missed two meeting with therapist in those last two months mainly due to scheduling and just being sick. Went back into UNC for a follow up and was immediately questioned what was my excuse for not following directives. Might as well said nothing. Needless to say I started my sobriety over again. All told I did 9 months of sobriety verification documented and paid for.

I went through pretransplant eval and made it to the list but not without snags. My MELD was 18 at that time. The ascites problem had gotten worse and a TIPS procedure had to be done or at least it became a option. Doc asked if I was interested and explained the risk. I had enough of hospitals over the year and no life. TIPS was presented as a quality of life not quantity of life procedure. It's not replaceable but can be repaired and if it goes bad, transplant is the only option. I signed the paper and off I went. Most medical papers say that TIPS typically does well for about 4 years and in most cases needs repair or transplant altogether. Doc says he has personally seem numerous TIPS patients and some have died of natural causes before they give out.

Well, I'm 5 years in roughly and still kickin pretty high for a dead guy. I don't act like a kid and I take care of myself. The fella I referred to earlier and I are worlds apart often in our thoughts on politics and society but we share the same philosophy when it comes to work ethics. Work? You ask? Yes work. It seems to be something in the ones of us who chose to fight against the odds. You mash your thumb or get stitches but you continue to work at what it is you have to do. Pain is intertwined with being successful at a job. Sometimes it's not physical, maybe mental but it's pain the same. You sit back on your haunches and whine about a splinter in your hand and see how long you last. Same applies here. Oh and the death thing. Well the only reason I intend on sticking around is to become a thorn in the buttocks of humanity. Gets me motivated every morning just thinking about it. Besides the view on this side of the dirt is much better.


Ziff

S&S, Thanks for the updates and perspective. We are lucky to have people here that help keep us sane during this time. You are doing amazing things for your family.

BBLT, I was getting paracentesis bi-weekly for three months prior to TIPS and finishing up evaluation process. I averaged 7 liters per visit and a few times had up to 13 liters at one setting. Not a diet I care to be part of for sure.

Ziff

My story pales in comparison to some of the gut wrenching things I've seen posted here. Odd to say but your dad seems to be one of the best cases I've seen when this portion comes about. Perhaps your dad can't say it but maybe I can. Thank you for being there for him. Not just the being present but the way you've handled yourself. My hope is that one day my daughter will be so thoughtful of me when that times comes. We are here when you need us as always and that is without condition of what the future holds for your father.

Ziff

I know how difficult it is to watch your father so sick. Be well.

Thank you everyone, tonight in having a lot of problems sleeping....I can't get my dad out of my mind I feel like rushing to the hospital to be with him, if my son wasn't with me tonight I would have or I would have slept at my moms. The hospital is an hour away and I don't mind driving to see him everyday. Next week I am off work because I work at a school and I have summers off....I'm going to spend next week at my moms, help her around the house and finish painting their deck. At this point, I sleep better at my moms it's so comforting to know I'm there for her as well. We had the biggest hug today, I've always been kind of a mamas girl :)

Hi Mae, no I don't it would usually be my mom or my sister. His father and I have split custody of my son and my time is my time. I do know my father would never want me to not be with my son on my time. But, my son is of age to stay alone for a few hours, so I can go to the hospital for a quick visit. If it gets to the point we need to be there, my brother in law will watch him at my sisters house. Your so caring and thoughtful Mae.

We have exceeded the size of this blog and need to continue "Scared and sad's" story as Volume II.

You can jump to that continued post here: www.healingwell.com/community/default.aspx?f=25&m=3121728

MamaLama, Moderator